Hydrocephalus and college: dreaming the possible dream (Part 2 of 2)

III. Who needs to know (about your hydrocephalus)

First and foremost, you should tell your new roommate(s) about your hydrocephalus simply because they are the one person you will be around the most during your academic career. It's best to inform them about it within the first few days after classes begin so that they will know what to expect and, more importantly, how they can help you in the event a situation arises where you need their assistance. It is also a good rule of thumb to let your resident advisor or guidance counselor about your hydrocephalus because they can guide you about who - if anyone - needs to be aware of your hydrocephalus. As you explain your hydrocephalus to your roommate and/or RA/counselor, make them aware of the signs and symptoms of a shunt malfunction so that they can assess your condition if you're unable to do it for yourself. It is also a good idea to make them aware of where you keep the file folder/notebook with information relevant to your condition. Lastly, ask your roommate or RA/counselor if they would be comfortable accompanying you to the hospital in the event a problem occurs. This will facilitate notification of your family and assure treatment is rendered in a timely manner.

Whether or not you inform your professor(s) about your hydrocephalus is a decision best made once made in the first few days of a new quarter / semester. Even if you have previously registered with your school's disability resource center (DRC), your instructors aren't made aware of your condition unless you decide to tell them.

IV. Tips and advice

Academics


I could write an entire blog about academics and those of us with hydrocephalus but one of the important thing to remember is - while researching schools you wish to attend - is to determine what services they offer for students with a learning disability. If you had an Individualized Education Program (IEP) in place during high school, your team should be meeting with you to assist in negotiating your transition.

Medical experts recommend that the beginning of your college years might also be a good time to schedule a neuropsychological examination. such an exam can pinpoint your learning strengths (and weaknesses) as well as guide you on what classes might be the best tailored to your learning style and ability.

As I stated above, make sure to contact your school's DRC  and let them know that you have hydrocephalus.  The staff in the DRC can assist you with any accommodations you might need such as extra time to complete exams or tutoring services.

Broken tubing in a
ventriculo-peritoneal
shunt

Alcohol

Let's be real college students (for the most part) experiment with alcohol. Although there is no known correlation between being shunted and experiencing an adverse reaction to alcohol, studies have proven that drinking in excess is not good for anyone. This is especially true for those of us with hydrocephalus (and particularly if you are shunted). I say that because the symptoms associated with a hangover (headache, lethargy, nausea, and vomiting) are also seen in the event of a shunt failure. The key difference being the symptoms of a hangover normally subside after several hours; if they persist - and you have a shunt - you should seek medical attention to prevent a potentially life-threatening situation.

Consumption of alcohol can also adversely affect your medications. While some simply loose their effectiveness, others can result in extreme drowsiness and other potentially dangerous side effects. The best rule of thumb is: if you take medication(s), don't drink alcohol.

Headaches

As strange as it sounds, headaches are often times a fact of life for many young people. The combination of deadlines, finals, too much junk food, and irregular sleep patterns can trigger a headache, however, if you are hydrocephalic, such an event could potentially be life-threatening. Even for the most knowledgeable person with hydrocephalus, it can be difficult to differentiate between a regular headache and a headache resulting from a shunt malfunction and/or failure. As a general rule, if the headache improves after taking a couple of Tylenol and resting for a short time, it is not coming from your shunt or as a result of your hydrocephalus. If a headache persist (or you have that "gut feeling" that something is not right) seek medical attention because it's better to be safe than to be sorry.

Additional information: College and hydrocephalus